Give me hope...Her2+++

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mommy13
mommy13 Member Posts: 127

I was looking at the survivor thread and notice a lot of the long term survivors are Her2-

Mine is grade 3 as well as her2+++

The doctors seem to think I will get through this treatment but seem very concerned for my future. 

I am 27 with a 4 year old and 7 month old. I feel like I'm not going to get to see them grow up. What are the odds I would see the age 40 with this type of diagnosis!!

I want these negative thoughts out of my head :(

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Comments

  • chrissyb
    chrissyb Member Posts: 16,818
    edited January 2014

    Mommy I am not her2+ but many of the women I converse with are and they are doing well so far......and I'm already talking years not months.

    For the Her2+ BC the magic bullet is the Herceptin and that seems to be keeping those that I know stable and so far cancer free.  With being closely monitored you should do well and be around for a long time.

    The fear that this disease brings with it can be unbearable but living everyday to the fullest regardless of future happenings is the best way I know how to live with it successfully.

    Good luck to you.

    Love n hugs.   Chrissy

  • fightinhrd123
    fightinhrd123 Member Posts: 633
    edited January 2014

    almost six years out, and so is my friend with the same diagnoses.  And in those six years she has stayed very active in the bc community, and all the HER2 women diagnosed with us that she knows are fine :) 

  • ruthbru
    ruthbru Member Posts: 57,235
    edited January 2014

    I had coffee today with a friend who was diagnosed with BC half a year before me, she was Her2 positive.......and is now 7 1/2 years out with no recurrence.

  • mommy13
    mommy13 Member Posts: 127
    edited January 2014

    Thank you for the encouragement ladies. I have just been feeling down lately. Think it's time to go in to the doctor to make some adjustments to my medication. 

    Fightinghard1 our diagnosis is somewhat similar. 

    Congratulations on your milestones. I pray I will be successful too :) 

  • ruthbru
    ruthbru Member Posts: 57,235
    edited January 2014

    Herceptin really is a miracle drug for you....they had just started giving it to lower stage ladies about a year before my friend was diagnosed, so she feels really, really lucky and blessed.....and she has more energy than anybody I know. Like for all of us, learning the diagnosis and facing the daunting challenges ahead was a horrible time, but she made it through the her treatments fine (she took a group of students to Europe between her last two Herceptin infusions!), and she is still going strong. Hang in there, once you get started it gets better, because then you are on the road to the other side; you just do it and get it over with.

  • mommy13
    mommy13 Member Posts: 127
    edited January 2014

    Yes I will be given Herceptin. Glad that there is something available for us Her2+

    I guess I am worried because mine is a high amount plus grade 3 etc. I'm mostly scared of it's showing it's ugly face down the road. 

    I hope I can be as strong as your friend! I am determined. Just scared for the future. I want to see my boys grow!

  • ruthbru
    ruthbru Member Posts: 57,235
    edited January 2014

    Grade 3 responds best to chemo. The faster they grow, the easier for the chemo to catch them and kill them off!

  • SpecialK
    SpecialK Member Posts: 16,486
    edited January 2014

    mommy13 - the way your level of Her2 is tested yields the +++ result.  The linked testing info below from BCO may explain it better, but anything less than the 3+ is considered Her2 negative in terms of treatment with Herceptin, although there is now some thought that those with a 2 may still benefit from Herceptin.  It is also common for Her2+ to also be grade 3 so don't let that throw you - ruthbru is correct, rapidly dividing cells respond best to chemo.

    The ImmunoHistoChemistry test finds out if there is too much HER2 protein in the cancer cells. The results of the IHC test can be: 0 (negative), 1+ (also negative), 2+ (borderline), or 3+ (positive — HER2 protein overexpression).

  • Faith316
    Faith316 Member Posts: 2,431
    edited January 2014

    Being HER2 ++ means you will most likely have Herceptin.  It has helped SO many women.  For those of you who have don't know, there is a movie called "Living Proof" about the development of Herceptin.  Not only is it informative, it is also a very good movie that stars Harry Connick, Jr..  It is available on Netflix if anybody is interested in watching it.  I actually purchased the movie a few years ago but donated it to the lending library at MDA's Rotary House in Houston.

    By the way, I also was grade 3 and HER2 ++ like you.  It is nearly 6 years from my initial diagnosis and I have been NED for 4-1/2 years.

    Good luck to you!

  • mommy13
    mommy13 Member Posts: 127
    edited January 2014

    thank you for the information. No one has really explained anything to me! Most of my research is done via internet which we know how that can go sometime!! 

    I understand it better and that actually gives me a lot of hope! I never knew that Grade 3 can respond better to chemo. Thank you that is comforting information. 

    I'm ready to get this show on the road. I hope I feel better once the process gets going. 

    I need a Cat Scan because my doctor feels that sometimes xrays or ultrasounds can miss things (bone scan, chest xray and liver scan all came back clear) but he just wants to be extra sure. So of course now I am worried all over again so I think this has my mind going in every direction. 

    So happy to hear you're 6 years out Faith316

  • ruthbru
    ruthbru Member Posts: 57,235
    edited January 2014

    Just stick to reputable places like BCO for information or you will drive yourself crazy. It sounds like your doctor is being thorough, which is good, but I think you will feel relieved to get started; because the sooner you do, the sooner you're done. Hang in there!

  • fightinhrd123
    fightinhrd123 Member Posts: 633
    edited January 2014

    My stats on the bottom are wrong, I actually had at least four pos nodes.  Mine was grade 3 too, and the way I see it now, is that since chemo attacks fast growing cells its actually better to be grade three.  It seems like more people with grade three get a complete response to chemo.  Are you doing chemo first?  Feel free to pm me anytime

  • mommy13
    mommy13 Member Posts: 127
    edited January 2014

    Good to know about grade 3. I'm finding things out slowly heh!

    I did surgery on November 28th. They want to start chemo on January 27th.

    The reason it is taking so long is I requested a CT scan in early Dec and somebody dropped the ball on it and now the referral wasn't sent until last week. 

    So I'm just waiting for a CT :/

    I will be 8 weeks and 3 days post op when I start chemo. Is this an ok time? Or pushing it? I'm scared we're waiting longer than we should! 

  • sheila888
    sheila888 Member Posts: 25,634
    edited January 2014

    Hi mommy13..I just came across your thread

    i know it's the most difficult time is the waiting

    I had a Lumpectomy April 27 2005 and my chemo didn't start until mid July

    Are you getting a port?

    I'm almost a 9 year survivor

    The best of luck to you

    Big Hugs from NY

    Sheila ♥

  • fightinhrd123
    fightinhrd123 Member Posts: 633
    edited January 2014

    You will be fine.  Do  you know what chemo you are doing?  Theres new drugs out since i was in treatment.  Really good ones. 

  • mommy13
    mommy13 Member Posts: 127
    edited January 2014

    Yes I get my port put in next week! chemo one week after. 

    I am doing FEC-D plus Herceptin. I am going to inquire about Perjetta 

  • fightinhrd123
    fightinhrd123 Member Posts: 633
    edited January 2014

    where do you live mommy13?  And yes perjetta for sure!!!  It seems like they give different chemos depending on where u live

  • mommy13
    mommy13 Member Posts: 127
    edited January 2014

    I live in eastern Ontario Canada. I guess the FEC-D is popular here from what I'm reading. 

    Hope it does the trick. I learned about Perjetta through this website. I hope he is open minded to it. He seems pretty old school and like "doctor knows best" so we will see. All I want is the best outcome! 

  • fightinhrd123
    fightinhrd123 Member Posts: 633
    edited January 2014

    well if he doesnt want to give you perjetta, go to another onc and get another opinion.  Im not sure though if its approved for use in Canada?  Any Dr you have should be willing to work with you to give you what you want.  My onc told me, the patients that researched and were involved in there treatment plans had the best outcome!  Do you have facebook? If you do you can add me. Laura Russell Pisano. I have a few breast cancer friends on there and its much easier to chat :)

  • marvelher2
    marvelher2 Member Posts: 62
    edited January 2014

    Wish me luck.  First TCHP treatment tomorrow at 10:00 a.m.  Gonna be a long day, at least five hours.

  • lkc
    lkc Member Posts: 1,203
    edited January 2014

    Hi Dear.

    I was also dxed with HER2 positive BC, and er/pr Negative. I also had 12 positive lymph nodes and a stage IIIC dx.

    That was 8  years and 8 months ago!!! and I am perfectly well and enjoying every second of my life.

    I know it's scary in the early days,  but you will be ok. Come here often for support and good information. The ladies here have all been through it and can help.

    BELIEVE!

  • ben50
    ben50 Member Posts: 46
    edited January 2014

    Hi mommy13,

    As far
    as finding long-term Her2+ survivors, I think you need to put the advances
    of medical treatment, research, and technology into perspective. Before
    Herceptin, the outcome of Her2+ breast cancer was far grimmer than Her2-. Herceptin
    was not approved for advanced Her2+ breast cancer by the FDA until 1998. Again,
    it wasn’t approved for use for in early Her2+ BC for many years after that. So
    knowing this, it’s not terribly surprising to me that you don’t see hordes of
    20+ years Her2+ survivors on these forums. First, the drug that totally changed
    the game did not exist until 16 years ago, and it has only been the staple of
    treatment for all Her2+ BC stages for about 5-10 years (counting the first
    clinical trials for early cases). Second, older BC survivors of all types are probably
    less likely to frequent forums like these as they’ve probably adapted perfectly
    well back into the normal rhythm of life.

    Advances
    for Her2+ BC have come leaps and bounds in a very short amount of time, and we
    should all be thankful that it is 2014 and not 1994 and for the individuals who came before us and were the treatment pioneers for this disease... As far as your treatment
    goes, I would demand the duel treatment of Herceptin and Perjeta. Herceptin
    inhibits one segment of the Her2 protein from communicating with other cells;
    Perjeta blocks a whole different part of the protein, further inhibiting the
    protein. This is why it’s considered dual blockage and because the results for
    pCR were so promising when using both drugs, Perjeta had an accelerated
    approval by the FDA. Perjeta, by the way,
    was just conditionally approved for use in early stage Her2+ BC about 2 months
    ago. It just goes to show you how fast the treatment of BC is evolving, improving,
    and everyone can better get on with their lives. You’re in a good place. Just
    be a strong advocate for yourself and get the best treatment you can! Personally,
    I support throwing everything you have at it, including chemo, bilateral,
    target, hormone (for our treatment), and rads – but that’s definitely just my
    opinion. And if you live in Canada, healthcare if free right??? Happy

  • flaviarose
    flaviarose Member Posts: 442
    edited January 2014

    I will agree that you should do everything possible - surgery, Herceptin, radiation.  But it shouldn't stop there.  Nutrition is very very important.  There are a lot of good books on the subject - and a lot of controversies - but some things are agreed upon - like eating a lot of cruciferous vegetables - drinking green tea, and many others.  Exercise is also important.  Prioritizing yourself (hard to do with small children, admittedly) - taking the time to exercise and eat right.  Also reducing stress - stress is a killer on many levels.  The oncology profession can do many things, but you on your own can also do many things to prevent a recurrence and live a long and healthy life.

  • mommy13
    mommy13 Member Posts: 127
    edited January 2014

    Thank you everyone for all the information it really helps a lot. 

    I'm trying to get as much information as possible on all my options and what works best hopefully. I have also drastically changed my eating habits. 

    I hope the combination of everything does the trick! 

    As for Perjeta I contacted my oncologist today and they told me it is for futhur staged breast cancer. So I started doing some research on the internet and saw it was approved for earlier stage BC but fro what I see it is only given if you do chemo before surgery.

    I had a mastectomy on Nov 28th. 

    Am I no longer a candidate for this? Or can it still be given even after surgery? Can anyone direct me to any information on this?

  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2014

    I am going on the tenth year since my diagnosis. Stage III, grade 3, ER+, Pr+, Her2+++. Herceptin is a wonder drug! It had just been approved for initial cancer treatment when I was in treatment. Previously, it was only approved for metastatic Her2 cancers. I'm sure Perjeta will be just as valuable, and the double whammy (Herceptin plus Perjeta) will be even greater. I don't know anything about when in your treatment it can be given, though -- perhaps more research will tell you & then you can bring it to your doctor.

    At your age, you should hit this cancer will all you can. But I do think you have a great chance of living a long & happy life -- and seeing those children grow up into fine adults who will give you grandchildren!

    Hope this gives you some hope.

  • marvelher2
    marvelher2 Member Posts: 62
    edited January 2014

    Unfortunately, I believe you are right mommy, from what I've read it's only approved for early stage for neoadjuvent chemo, and only for tumors that are over 2 cm.  I'm not sure why that is, but please ask about it and maybe write the manufacturer as your Oncologist seems to be a little behind the times if he doesn't know about the recent FDA decision for neoadjuvent use.  Things are changing so fast that who knows what changes are in the works.  I also read on their site that people are eligible to receive monitory assistance for 90% of their copays for this treatment.  I might check it out as this is a very expensive drug, about twice the price of the Herceptin.

  • marvelher2
    marvelher2 Member Posts: 62
    edited January 2014

    mommy, I just read the Perjeta website and it hasn't yet been updated for the new FDA decision, so maybe that's what your Oncologist read.  Here is the FDA announcement.  You may want to share this with your oncologist.  http://www.fda.gov/NewsEvents/Newsroom/PressAnnou…

    If you were planning a mastectomy, it may not have been necessary to include Perjeta because the reason it was approved for neoadjuvent use is because of the high pCR (pathologically complete response) people got in the clinical trials, which makes people with larger tumors more eligible for breast conservation surgeries (lumpectomy).  Many people feel its better to do a mastectomy, so this treatment might have shrunk the tumor considerably neoadjuvently, but if you were planning a mastectomy anyway, it wouldn't really make that much difference at this point in its development.  I was hoping to avoid mastectomy, but was not a candidate with my current tumor size which extends almost 6 cm with the DCIS surrounding the primary 2.6 cm tumor, so this was the perfect combination for me.  

  • Macy187833
    Macy187833 Member Posts: 182
    edited January 2014

    Interesting thread with a lot of good information! 

    I was wondering about the Perjeta too. It wasn't offered to me but I had surgery first, then chemo. I had a large tumor at 10cm and while my BS and team deliberated about doing chemo first...they decided surgery was best and I agree. I had a single mastectomy...I just wanted that whole thing gone! 

    Mommy, I understand your fear. If you look at my diagnosis below, I also was initially diagnosed with DCIS but was Stage III after my lumpectomy. It is so hard at the beginning. You will feel a little bit better hopefully once your treatment starts. At least for me, I felt like I had taken some control of the situation. 

    Hugs to you and keep coming here for encouragement. Some of those other sites and information that you find on the internet can be darn scary. 

  • ben50
    ben50 Member Posts: 46
    edited January 2014

    You're all correct about
    Perjeta being used primarily in the neoadjuvant setting. In fact, after
    surgery, it's still not standard practice to receive Perjeta in addition to
    your year of (adjuvant) Herceptin. However, our Oncologist at MD Anderson recommended
    that we take Perjeta as long as possible in combination with our year
    of herceptin and we were lucky enough to have our insurance company approve it.
    Like I said, it’s not the standard in the adjuvant setting but I would
    recommend everyone ask their oncs about it. 

    mommy13, you went a different
    route for treatment which is totally fine. And I am in no means a doctor, but I
    do believe your onc may not be up-to-date on his research. Of course because
    you already had surgery, the important thing is your get Herception – which you
    are. One thing you CAN still look into is the chemo regiment you will be receiving.
    For us Her2’ers, the biggies being debated right now is TCH (Taxotere,
    Carboplatin, Herceptin) vs ACH (Anthracycline-based
    and Herceptin). The skinny on this is they have very similar results, meaning they
    are both being very effective. However, TCH has been proven to be less toxic to
    the body than AC (while producing the same results). So the standard practice
    seems to be leaning towards TCH. This is something I would definitely talk to
    your onc about and if he has you doing an AC regiment, I frankly would get a
    second opinion. Though obviously you are an individual and AC very well may be
    treatment in your case.

  • mommy13
    mommy13 Member Posts: 127
    edited January 2014

    Yes it is an interesting thread I have learned so much glad I posted this question!!!

    Well to be fair I got my info from the onco nurse I haven't yet asked the Dr. about Perjeta but will at my next visit. Even though from what I read I'm not a candidate. 

    I am getting the FEC-D regiement. I will ask about other regiments when I see him next. I personally don't know much on chemo regiements but all I know is I want to start SOON!! Hope they put me on one that works! 

    But think I will do a little research too ... can't hurt!! 

    Thanks for all the info!! 

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